Daughter (15) with bad vertigo flare up - nothing helping

I am new to this site, but as I’ve have been reading your posts over Christmas, I’ve learned so much! Mostly that we are not alone in this. I have two teenage daughters (15 and 17-1/2) who have suffered with vertigo since they were each about 12. It’s there 24/7, 365 days a year. Never lets up. They have a “baseline” that we measure by, but the 15-year-old has been in a severe flare up for about a week now. A mild cold seems to have brought it on, in addition to the fact that it was a week before her period (never a good time) and throw in Christmas and it was a recipe for disaster. We control their “normal” vertigo with doses of meclizine throughout the day, but it’s not working very well this time. We also had some Phenergan suppositories that we’ve used, too, that helps keeps the nausea at bay and allows some sleep at night. They each used to get migraine headaches as well, but now it’s just the vertigo. Does anyone have any suggestions for controlling vertigo that is primarily related to hormones? They each also have a diagnosis of Fibromyalgia as well, so they are extremely hypersensitive to just about everything.

I’m so sorry for what your girls are going through, when mine is bad I use valium aswel as anti nausea meds. Valium for me is the best to help and I can up the dose depending how severe the attack is. Best of luck are your girls on any kind of migraine preventative med?

For pure vertigo and nausea I found prochlorperazine pretty good, but you needed to double the dose to have enough effect. I only used that when my original diagnosis was Labrynthitis and not MAV, before I got the headaches. It is mildly sedating though so best for short term relief only.

Thank you for the replies! No, the girls only take meclizine for the symptoms not the cause. My oldest tried a few a couple of years ago, but couldn’t take the dose the dr. wanted. Too many side affects. Think we’re going to have to try again. This is impacting their lives so much. The one neurologist I did like actually had family members with migraine/vertigo. He said he’d be a very rich man if he could cure vertigo. Most doctors think if you do the Epley manuevers, you’ll be all better. That only makes them worse. Thanks for both of your comments.

Hi,

Im so sorry for your girls, they’re so young! Vertigo is awful, I completely empathise.
Where are you from? Have they been properly diagnosed? Sorry if I’m making you repeat yourself! Have they tried an exclusion diet? Eliminating caffeine, chocolate, cheese, msg, citrus, and in some people eggs, freshly baked bread.

I’m sure you’re at your wits end! I too suffer around my periods, my MAV has just ramped up as I think I’m in the peri menopause. I only had my first aura last year but had headaches all my adult life but I thought they were due to my M.E. (Chronic fatigue) I also have had vertigo since my early 20’s while expecting my Son, who now has migraine.

They obviously need a different medication that suits their needs, as the current one isn’t working! I know I’m stating the obvious but if you need a neuro-otologist in the South East of England I have a very good one who specialises in MAV.
Dr Surenthiran.

Hope things improve for them, especially the 15 year old

Take care

Bev

Your poor girls I really sympathise. My dizziness is totally linked to hormones and my cycle. I also have polycystic ovaries which has made things worse. Have they tried taking the contraceptive pill to even out their hormones? I think this can help but I’ve always suffered bad side effects (nausea, low moods) so never lasted long taking it. Evening primrose oil as a natural alternative is great, I have felt remarkably less dizzy since taking it combined with migraine diet, regular sleep etc.

Yes, maybe try a low dose b.c. Pill I wish them well. We are all just wanting stillness…I hope they can find it.

Hi there, and thank you all for the replies! Here’s an update on my daughter. After a somewhat better day yesterday, meaning she actually got up off of the couch for a little bit a couple of times, she had a much worse evening. Thought we might have had to take her to ER. Did e-mail her dr. and he actually got back to me around 12:30 a.m. I had fallen asleep by then (so had she), so I didn’t get the e-mail until this morning. But in a nutshell they said to bring her in. Come to find out, she has two ear infections. Now, how many people go into full vertigo with ear infections? Only the most sensitive of us. Really hoping that the antibiotics help and the valium, too (has her on a low dose to calm her system down). This still doesn’t explain why she has a milder form of vertigo everyday. Somebody asked what country I lived in - we live in the San Francisco Bay Area (USA). We do have access to some of the Universities doctors, so that is a good thing. Although, very few have ever been able to figure any of either of my daughter’s problems out. My mom, who has the same problems and more, has been referred to a rheumatologist in Napa, CA. We’ll see what he has to say. My 15-year-old is almost a carbon copy of her. Someone recently had recommended to her seeing a geneticist because my daughters and her have mostly the same symptoms. I don’t have the vertigo, but I do have fatigue and body pain that never left after having the two girls. Some of the symptoms seem to have skipped a generation. Migraines also run in both sides of the family (husband’s sister and granddaughters/myself). Taking it day by day.

When you say she has two ear infections, do you know exactly what the doctor saw for her to come to that conclusion? A retracted eardrum? Redness?

I’m asking because I frequently have retracted eardrums, which CAN be a sign of ear infection, but, in my case, the retraction is related to what is going on with me, not a result of an infection.

Hmmm…that’s interesting. He said that they were “red and bulging” and that one of them was “dull” which I took to mean that it was worse than the other. I think I remember him saying before that eardrums are supposed to be shiny. I don’t think he said anything about them being retracted, though. I think this is actually the first ear infections that she’s ever gotten. Just thought about that.

Have you read the survival guide that Scott put on here?..it should definitely help you and your girls-- not sure if you read that already or not. Well wishes, Leann

— Begin quote from "Dizzy girls"

Hmmm…that’s interesting. He said that they were “red and bulging” and that one of them was “dull” which I took to mean that it was worse than the other. I think I remember him saying before that eardrums are supposed to be shiny. I don’t think he said anything about them being retracted, though. I think this is actually the first ear infections that she’s ever gotten. Just thought about that.

— End quote

I would think “bulging” is the opposite of retracted, which would be when the the eardrum is sucked back into the middle ear space.